Independent Choices: Enhancing Consumer Direction for People with Disabilities

Allowing consumers to manage and direct the long-term services they need acknowledges that they are the best judges of their own needs and the best decision-makers on how these needs get met - an acknowledgment seldom made. Internet publication URL: www.independentliving.org/docs4/ar3983.html

Ms. Nadash, a graduate student at Columbia University, is former Director, National Institute on Consumer-Directed Long-Term Services, The National Council on Aging.

The consumer direction movement stems from the realization that, too often, people with disabilities and older persons are denied the opportunity to exercise choice and control over some of the most basic and intimate aspects of their day-to-day lives - the personal assistance and other long-term services they receive. It is argued that consumers who manage their own support services, either directly or through a chosen advocate, can develop a package of services that reflects their individual preferences and values to an extent unmatched by anyone arranging services on their behalf. Additionally, providing consumers with the option of managing and directing the long-term services they need is an acknowledgment that they are the best judges of their own needs and the best decision-makers on how these needs get met - an acknowledgment too often not made.

Consumer direction includes people with disabilities of all types and from all age groups. It also explicitly builds on work done by others. For example, many of the ideas that have been incorporated into consumer direction were actually developed first by independent living advocates and implemented by people in the mental retardation/ developmental disabilities (MR/DD) world. The goal of consumer direction is to bring together the ideas developed in these many different worlds of disability and aging and the people working in these different areas of long-term services. In this way, the creativity and strength of these different groups can be combined to benefit all.

Having said that, it is recognized that services for older people are one of the most important targets for change. A disturbing proportion of those serving older persons with disabilities fails to acknowledge their right to make genuine decisions about their lives. Similarly, the structure of service delivery often fails to allow choice and control for older persons who use long-term services. Because older persons are the majority of long-term service recipients, these attitudinal and structural barriers affect the way that services are provided to all people who use long-term services. So if long-term services as a whole are going to be changed, the disability community (including older persons who are disabled) needs to acknowledge that, for most of the general public and for most legislators, long-term services are services for older people - and older people need to be protected. In practice, this often means that their freedom is restricted.

The financing of long-term services is another reason for the paternalism of the system. Administrators of public funds quite rightly feel a duty to ensure that funds are used in appropriate ways; voters and legislators alike demand this. Administrators, then, are all too aware of the possibility of misuse, and the scandal that would result. Consequently, programs are designed to allay those fears, often by placing limits on who can provide services. Such limits have further consequences: a lack of competition, consumers who have to "take what they can get," and service providers that are not responsive to consumer needs. The pressure created by limits on budgets exacerbates the situation even further.

Despite the forces that make innovation in long-term services difficult, consumer direction does seem to be the way of the future. There is evidence that program administrators are more aware of the movement and, to some extent, are making changes that integrate consumer choice into their service delivery systems. Certainly the initiatives described later in this article and elsewhere in this journal represent some important steps forward.

A similar wind of change is sweeping the rehabilitation world. According to a survey conducted by the National Council on the Aging (1), administrators of vocational rehabilitation (VR) programs are the least likely of those surveyed (who also included administrators of aging, Medical Assistance, and MR/DD programs) to report knowledge of consumer direction (85% of VR administrators versus an average 94% of other program administrators). VR administrators also expressed the least interest in advancing consumer-directed programs for persons with disability or older adults in their departments - 63 percent of VR administrators expressed interest versus an average of 71 percent of other program administrators. They are also least likely to report that programs integrate some key features of consumer-directed programs, such as consumer control over choice and payment of providers.

However, it appears that changes will be coming soon. For example, it is notable that two bills addressing the same issue have been presented to the 105th Congress. Both the "Ticket to Work and Self-Sufficiency Act of 1998" and the "Work Incentive Improvement Act of 1998" bills seem to reflect a consensus that some change to the system is needed. Both of these bills would provide Social Security Disability Insurance (SSDI) recipients with a choice of service providers. While the prospects of these individual bills are uncertain, the spirit that inspired them is surely a sign of change.

What Is Consumer Direction?

Consumer direction is very much related to other notions, such as "self-determination," "independent living," and "autonomy." All of these ideas are linked by a similar insight - that individuals should have control over their circumstances - but have been developed within their own discrete worlds. To pull together these ideas, the National Council on the Aging (NCOA) developed the following definition of consumer direction in partnership with a variety of aging and disability groups:

"Consumer direction is a philosophy and orientation to the delivery of home and community-based services whereby informed consumers make choices about the services they receive. They can assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services received. Consumer direction may exist in differing degrees and may span many types of services. It ranges from the individual independently making all decisions and managing services directly to an individual using a representative to manage needed services. The unifying force in the range of consumer-directed and consumer choice models is that individuals have the primary authority to make choices that work best for them, regardless of the nature or extent of their disability or the source of payment for services."

This definition contains within it a number of important ideas. The most important of these have been identified as our key principles, which articulate some basic assumptions underlying the consumer-directed approach to systems design and service delivery. Some of these key principles are that:

Systems should be based on the presumption that consumers are the experts on their service needs. This principle underscores the belief that an informed consumer is the best authority on what his or her service needs are, how these needs are best met, and whether these needs are being met appropriately. The consumer should be presumed competent to direct services and make choices - regardless of age, nature, or extent of disability - just as ordinary citizens are presumed competent to make all manner of decisions about their day-to-day lives. Part of this presumption of competence is an understanding that even though information and other forms of support are necessary to enhance an individual's ability to make decisions they by no means compromise it.

The presumption of competence also means that a consumer's decision to delegate responsibility for directing certain aspects of service provision to other persons can be a consumer-directed choice, under the right circumstances, such as when a choice is based on sound information about service options and made in an environment in which viable choices exist. Several delegation arrangements can be considered consumer-directed:

where a consumer freely chooses a representative to act on his or her behalf;

where a consumer freely selects a service arrangement that manages services on behalf of the consumer; and

where a person with cognitive impairment has a family member acting as a consumer on his or her behalf.

Another important element of this principle is the presumption that consumers are the best monitors of service quality, particularly when they have been provided with training that would help them to do this. Such training might involve basic information about consumers' medical conditions and the forms of assistance that would best maintain their functioning. It might also involve training on how to manage a worker so that services are delivered in the most appropriate way. This type of training could provide a more effective means of ensuring quality than any number of rules and regulations that attempt "top-down" quality assurance. What better way of ensuring the onsite oversight that is so lacking in the home care world? Rather than responding to a supervisor, who can have only a vague notion of a worker's capabilities, the worker would learn that he/she must respond to the consumer's authority.

Different types of services warrant different levels of professional involvement. The appropriate level of professional knowledge and expertise differs significantly among service types; for example, assistance with personal care activities and housekeeping does not require high levels of professionalism, while medical services do. The ability of consumers to assume full responsibility for services varies accordingly. Persons with disabilities, for example, are perfectly competent to determine their personal assistance and housekeeping needs, direct the delivery of services, and monitor the quality and appropriateness of services, particularly if they have access to information and other forms of support. As the complexity of the service grows, consumers become more reliant on the expertise of professionals to translate their needs into actions. However, the principle of consumer direction continues to apply even in complex situations; that is, consumers retain the right to participate in assessing need, evaluating options, deciding a course of action, and determining the appropriateness of that course of action.

Consumer direction poses a challenge to traditional assumptions held by many aging services and some disability services, which consider that professional intervention is not only appropriate but also required, based on the consumer's disability, age, or functional status.

Choice and control can be introduced into all service delivery environments. Systems can be designed to include a variety of options that cater to diverse groups of consumers, whether they wish to exert total control or very little control over services. Indeed, the range of preferences expressed by consumers opens up possibilities for enhancing consumer direction within many service delivery environments. For example, home health agencies can easily make changes to adapt to a consumer whose only strong desire is to control the choice of worker; other consumers' preferences will require a greater measure of change. Whatever the organizational restrictions posed by different service delivery environments, possibilities exist for enhancing consumer control.

Not only do consumer-directed service systems support the dignity of people requiring personal assistance, but they can be less costly when properly designed. There is evidence that, by cutting out much of the administrative overhead associated with home and community-based services that are either provided directly by government departments or contracted to private agencies, consumer-directed services can be less expensive than services delivered through traditional mechanisms. For example, some studies, here and abroad, suggest that efficiencies can be achieved through "cash and counseling" programs. However, there is much to be learned about the design elements that result in savings and about cost savings that can be achieved through other forms of consumer-directed service systems.

Consumer direction should be available to all, regardless of payer. Although the well-off have long been able to direct personal assistance services according to their preferences, people who rely on publicly financed services or on services paid for out of insurance monies have much less control over the services they receive and have significantly less control than people who receive other forms of public assistance, such as Supplemental Security Income (SSI) or Aid to Families with Dependent Children (AFDC). Inability to control the form of assistance received is severely dehumanizing, particularly when payer control extends to issues concerning day-to-day existence (e.g., eating times or living environment). Disability, whether mental, physical, sensory, or age-related, when combined with reliance on public assistance should not provide a rationale for others to make decisions about every aspect of a person's life.

These principles expand on many of the issues raised by the definition of consumer direction. However, they are not necessarily useful in determining whether a particular program or service is consumer-directed. One of the paradoxes facing those who hope to reform service delivery is that so many programs claim to be consumer directed but are not in practice.

Certainly, the official rhetoric that service providers are trained to embrace is very consumer directed. The difficulty, it appears, is that no amount of consumer directed rhetoric will ensure that consumers make decisions for themselves. To think that better training of case managers and other service providers is the answer ignores the structural basis of the problem - that consumers lack the power to have their decisions enforced. So long as consumers rely on the good intentions of another to ensure that their decisions are enforced, the ability to control their lives will elude them.

How does this rhetoric translate into reality? To make such a judgement, NCOA saw a need for criteria against which services could be assessed. To determine how consumer-directed a program is, the following elements need to be examined:

The ability of consumers to control and direct the delivery of services. How much control do consumers have over how, when, and by whom services are delivered, and to what extent do they determine the type and quality of services received? How easy is it for them to implement their service delivery preferences?

The variety and type of service delivery options actually available to consumers. Do consumers genuinely have choices, ideally a range of viable service options, available? Are there any limits, risks, or restrictions to consumer control? Is the playing field level - for example, are all the options of roughly equal quality and cost to the consumer? Are consumers locked into a system once a choice is made?

The availability of appropriate information and support. Are information and support available that enable consumers to take advantage of a consumer-directed system of service delivery? Are consumers informed about the options available and the personal, legal, and financial issues associated with these options? Are consumers provided with the support needed to make their choices viable, and can they be assured of continuing support once a decision is made?

The ability of consumers to participate in systems design and service allocation What level of participation do consumers have at the policymaking level - for example, in the overall design of service delivery systems? What means of redress is available to them? What is their level of participation in the service allocation process and who decides how consumers' needs are best met? Do consumers have the power to influence these or any other decisions?

Why Consumer Direction? Why Now?

Although much of the inspiration behind consumer direction began with the independent living movement - which started in the late 1960's, when people with disabilities began to demand the right to participate fully in society the reasons it has taken off have been more varied. Part of the reason lies in an awareness that future recipients of publicly funded long-term services are likely to be very different from many of current recipients of those services. Services will need to change in response to these different expectations. In particular, they will need to respond to yet another demanding population: the people with disabilities who are now living into old age.

People growing into old age now have had a lifelong experience of being demanding and discerning users of services and purchasers of products. They are accustomed to living in a consumer-oriented society. In contrast, many of those who are currently in the older age groups were marked by other experiences, such as living through the Great Depression, when people took what they got and were grateful for it. Such generational experiences are reflected in people's attitudes toward the long-term services they receive.

In addition, the majority of those currently using long-term services are older women who, generally speaking, have not had a lot of experience in controlling their lives. In contrast, women who are currently aging into the use of long-term services have had more experience of control over their lives. Consequently, their demands and expectations of aging are likely to differ from the current cohort of aging persons.

Yet another factor in the changing service environment is the increased need to respond to payer's needs. More and more, public payers are encouraging the use of market forces to help determine which services are most suitable for consumers. More and more, providers will need to compete for business from consumers, managed care organizations, and public payers. These changes will force service providers to become more responsive to consumer needs.

Increased competition is at least in part due to a belief that competition yields improvements in the quality of long-term services. Consumer direction increases competition, but it can also be seen as another type of response to the need for improved quality assurance mechanisms. Program administrators are acutely aware of the short comings of top-down structural and procedural methods of assuring quality: the record of success has not been as strong as it could be; they are expensive to administer and monitor properly; and they can limit flexibility in service delivery. Rather, consumers can be used to provide ongoing feedback on the performance of the service provider. To often, however, this feedback is limited to crude measures of overall satisfaction; rather, administrators could be using consumers' onsite monitoring capabilities to assess objective features of service delivery, such as timeliness, appropriateness of service, and other service delivery features.

Additionally, quality can be improved by giving consumers a greater ability to enforce their requirements of service providers - by giving consumers who would like this responsibility the power to hire and fire, for example. This form of quality assurance is particularly suited to long-term services because, unlike other products on the healthcare market (such as health insurance or specialist services), the quality of the services is fairly transparent to users. Also, because of the long-term nature of their condition, consumers are often knowledgeable about their long-term service needs. With appropriate training, consumers who want to take on this role can be highly effective in ensuring that services are delivered the way they want. And who besides the consumer has more of an interest in ensuring that services are high quality?

Still another factor that consumer direction responds to is the increasing scarcity of suitable personal assistants. Many consumer-directed programs make it possible for consumers to choose from a wide variety of service providers, sometimes even from family members. By choosing a worker who has some personal connection with the consumer - whether that be because they are neighbors, fellow church goers, or relatives - services may be more reliable and responsive. Consumers in rural areas may be able to find local providers when they are not restricted to agency rosters.

Efforts to Develop Consumer Direction

The trend toward consumer direction has very much been embraced by those who hope to improve service delivery. Major players include charitable foundations such as The Robert Wood Johnson Foundation (RWJF), which is funding a number of initiatives in this area; federal policymakers, especially the Office of the Assistant Secretary for Planning and Evaluation (ASPE) in the U.S. Department of Health and Human Services; state-level policymakers; and advocacy groups such as The National Council on the Aging.

Three major RWJF projects are the Cash and Counseling Demonstration and Evaluation Project (discussed in two other articles of these special issues of American Rehabilitation, the evaluation is funded by ASPE); the Self-Determination for People with Developmental Disabilities Project; and the Independent Choices: Enhancing Consumer Direction for People with Disabilities grants program. All of these three projects represent important steps in making consumer direction a reality.

Self-Determination

The Self-Determination Project grew out of a local project developed by Monadnock Developmental Services, Inc., (MDS) in New Hampshire, which aimed to show that consumer direction was appropriate for people with cognitive impairment. It was awarded a 3-year demonstration grant from RWJF - starting in 1993 - to address three major problems in New Hampshire's developmental services program: the high costs of care, the increasing waiting lists, and consumer dissatisfaction with the ways in which support was provided. MDS has put into practice the guiding principle of self- determination, "the idea that people with disabilities will determine their own future, with appropriate assistance from families and friends"; MDS has also tried to put into practice the belief that individuals with disabilities should have both the means (funding) and the authority (through the planning process) to plan their own lives.

Out of this project was developed another, more ambitious project, also funded by RWJF. Self-Determination for Persons with Developmental Disabilities is a $7 million grants program; its National Program Office is based at The University of New Hampshire Institute of Disability. The aim of the program is to jump-start states' long-term support systems for persons with developmental disabilities, enabling them to become contributing members of their communities. Nineteen states are receiving grants to initiate system changes and translate these changes into meaningful reforms for significant numbers of persons with disabilities in at least two communities in each state. (Awards were made in January of 1997.) Ten more states are receiving smaller grants to provide technical assistance to local communities that are attempting to make systems changes.

Some exciting developments have already taken place. Hawaii, for example, has passed legislation authorizing individual budgets for people with developmental disability. With individual budgets, people are given a set amount of money that can be used to access a wide range of supports, including personal assistance and other services that support community living. Minnesota has accomplished a similar end by obtaining approval from the Health Care Financing Administration (HCFA) to add self-directed supports to the list of Medicaid services it supplies under its MR/DD home and community-based waiver. And Michigan has a waiver application pending that would meld managed care with self-determination.

Independent Choices

Independent Choices: Enhancing Consumer Direction for People with Disabilities is a $3 million national grants program of RWJF. Its aim is to foster the development of consumer-directed home and community-based services for people by funding 13 demonstration and research projects. Importantly, grants are not restricted to an age group or to a particular set of disabilities, allowing parallels to be drawn between different populations and service delivery systems.

Four research projects are helping to expand knowledge about consumer direction. One of the most common questions is whether consumers actually want consumer direction and how preferences for it might differ among groups of consumers. Looking specifically at the question of how different groups of ethnic elders vary in their desire for consumer direction is the Elder Preferences For Consumer Direction project, conducted by Mark Sciegaj of the Institute for Health Policy at The Heller School of Brandeis University. Another project, conducted by Larry Polivka and Jennifer Salmon of the Florida Policy Exchange Center on Aging, University of South Florida, looks at Factors That Influence Consumer Choice.

The aim of this project is to determine the extent to which choice and control are instrumental in a consumer's decision to receive long-term services and the quality of life when receiving services; the project will compare older people living at home and in assisted living.

Yet another research project deals with family members who act as decision-makers for people with cognitive impairment. Making Hard Choices: Respecting Both Voices is a project of Lynn Friss-Feinberg at the Family Caregiver Alliance in San Francisco and explores the decision-making process and perception of choice in service options for adults with mild to moderate cognitive impairment and their family caregivers. Lastly, the Evaluation of a Consumer-Driven Personal Care System is being conducted by Kris Hagglund and Mary Nack of the Rusk Rehabilitation Center at the University of Missouri-Columbia. This project will evaluate a consumer-directed personal care program that is integrated into a Medicaid managed care delivery system for people with physical disabilities.

The nine demonstration projects cover a wide range of issues. Three will test structural innovations in the delivery of long-term services. Consumer Direction In Ohio's PASSPORT Program, conducted by Suzanne Kunkel, Pam Mayberry, and Marisa Scala of the Scripps Gerontology Center at Miami University, will allow consumers in Ohio's existing home and community-based Medicaid waiver program to use a menu of service options - fiscal intermediary services, flexible care planning, and self-directed case management - and develop training programs on consumer-directed options. Consumer-Directed Independent Choices, run by Julia Huddleston of Oregon's Senior and Disabled Services Division, will allow Medicaid consumers to use cash to purchase long-term services, in an effort similar to the Cash and Counseling Demonstration and Evaluation. The third, Consumer-Directed Personal Assistance Program for the Cognitively Impaired applies a consumer-directed model to a unique population. Conducted by Jean Marks of the New York City Chapter of the Alzheimer's Association, this project will implement and evaluate supportive services, such as training and education on personal assistance services, that will enable persons with Alzheimer's disease and their families to participate successfully in a consumer-directed program.

Yet another project will look specifically at the supports needed for persons participating in a consumer-directed program. The Consumer Support Training Demonstration, conducted by Nancy Eustis at the Hubert H. Humphrey Institute of Public Affairs at the University of Minnesota, is a partnership with the Minnesota Department of Human Services to support the state's Consumer Support Grant Program, which allows consumers to receive cash for long-term services. It will develop supports for CSG participants, provide them with cash management skill, and evaluate the support provided.

Another project aims to make home health agencies more consumer directed. Incorporating Independent Living Philosophy into Home Health Agencies is run by Diane Coleman of the Progress Center for Independent Living in Forest Park, Illinois. The Progress Center and Lutheran Social Services, a home health agency, are working together to make services more consumer responsive; the project will also develop a manual for other centers and home health agencies across the country.

The Rapid Response Worker Replacement project aims to tackle a problem experienced by users of personal assistance everywhere: their need for personal assistance at short notice. It seeks to demonstrate a cost-effective and consumer-driven system of emergency PAS, to increase consumers' safety and security, reduce use of 911 and emergency room services, and develop a model of emergency backup services that can be replicated nationally. Deborah Doctor of the Public Authority for In-Home Supportive Services in Alameda County, California, is conducting this project.

Consumer direction means not only respecting other cultures' preferences regarding long-term services, but also conducting projects in a consumer-directed way. The American Indian Choices: Culture and Context project will develop, demonstrate, and evaluate the application of a "talking circles" model to creating long-term service options that are consistent with tribal resources, cultural considerations, and the spirit of consumer choice. LaDonna Fowler at the University of Montana Rural Institute on Disabilities conducts the project.

Another project tries to use consumer cooperatives to increase the benefits and efficient use of personal assistance services (PAS). The California PAS Consumer Co-op Project is headed by Barbara Wheeler of the Children's Hospital University Affiliated Program at the University of Southern California in Los Angeles. Four project partners will develop, implement, and evaluate the co-ops.

Lastly, Promoting State Policy Reform to Enhance Consumer Direction aims to work with state agencies to achieve changes in policy by infusing consumer-directed principles and practices into the design, management, and delivery of community-based services programs. Virginia Dize at The National Association of State Units on Aging in Washington, DC, will prepare a guide that will provide a protocol for identifying prevailing policies and practices that impede consumer direction; the project will work with identified states to implement changes.

Consumer-Directed Durable Medical Equipment

In yet another initiative to use the power of consumers to improve service quality, HCFA is inviting centers for independent living (CIL's), to test a model of consumer-directed durable medical equipment (CD-DME) for Medicare beneficiaries. Demonstration participants will provide assistive technology information and facilitate consumers' access to expert assessment and care coordination. In partnership with consumers with physical disabilities, participants will work to acquire Medicare-financed DME products and services more efficiently, using a prior authorization claims process. Savings accrued by this more efficient purchasing will then be (1) used to establish beneficiary credit accounts that may be used by beneficiaries to obtain enhanced equipment and/or services not covered by Medicare, and/or (2) considered as potential Medicare program savings.

Once payment is authorized, a credit account will be maintained with funds that the consumer may draw upon to acquire equipment, with any unspent balance available for additional features, equipment maintenance, or for other wheelchair DME-related needs not subject to Medicare coverage rules. Four grants will be awarded in late summer 1998.

Conclusion

Consumer direction responds to a number of important needs that currently exist in the long-term services arena: the changing cohort of aging persons; the changes in attitude toward disability exemplified by ADA; the need for incentives to providers that result in consumer-oriented behavior the shifts in approaches to quality improvement; and the need for innovation in long-term services. Until recently, only a few isolated programs put consumer direction into practice. Evidence was lacking that would address the concerns raised by the skeptics. With recent initiatives, however, a body of knowledge should arise that will set consumer-directed practice on a firm basis for the future.

Note

1. National Institute on Consumer-Directed Long-Term Services, State Administrator Knowledge, Practices, and Attitudes Regarding Consumer Direction. Washington, DC: National Council on the Aging. March 1998.